Approximately $230 billion a year in healthcare costs are directly related to illiteracy and the social factors associated with illiteracy.

“Illiteracy” is such a broad term. It states a fact, but the underlying causes and far-reaching life and generational impacts are less well-stated.

The problems are hiding in statistics from multiple organizations. Federal and state publications, juvenile and adult penal system statistics, morbidity and mortality statistics, figures on unemployment, obesity, education, physician reports of non-compliant patients, healthcare costs – the list goes on. I should have recognized the tip of the iceberg in the 1980s, when my husband, a technical writer for how to operate one of our missile systems, complained that everything had to be written at a fifth-grade level so the soldiers could figure out how to launch the missile. I wondered, how hard to comprehend are fifth-grade words? Just a few examples from current educational websites include: alert, evade, painstaking, accommodate, premature, experience. Easy words for us, perhaps but not for the illiterate.

Before we can fully understand the healthcare ramifications, we need to look at a much broader picture. Although statistics vary a small amount, depending on the source, they are mostly very consistent. Seventy-five percent of state prison inmates are classified as low-literate, defined as an inability to read, write, and use numbers effectively. More than 30 million U.S. adults cannot read, write, or do math above a third-grade level, and 21 percent read below a fifth-grade level. Nineteen percent of high school graduates cannot read. Children who have parents with low literacy have a 72 percent chance of having the lowest level. Currently, the average reading level in the U.S. is eighth-grade. However, some cities have been reported as having a 70 percent illiteracy level.

The Patient Protection and Affordable Care Act (PPACA) defines health literacy as the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate decisions. Based on the above statistics, there is a massive chasm between patient understanding of their healthcare diseases and conditions, needs, and management, and the instructions and materials upon which they must rely.

The American Academy of Family Physicians published a piece indicating that most healthcare patient instructions are written at a 10th-grade reading level. Potentially, providers are giving such reading materials to patients who are capable of interpreting and understanding only at a fifth- or third-grade level. Although many facilities do have grade-appropriate materials and even pictures, many illiterate patients hide it well. In the Physicians Foundation 2018 Physician Survey, 52 percent of physicians reported that they see patients affected by a social determinant of health (SDoH). In aggregate, from most to least compliant, about 87 percent of physicians reported seeing some patients who do not consistently follow their treatment regimens.

Certainly, the cost of medication, cost of care, easy ability to travel and keep appointments, childcare, work requirements, and other variables apply here. However,  I must question how much of this reported non-compliance is directly related to the inability to comprehend the care advice. I also want to stress that this is not a limiting factor only to those with illiteracy. Many senior patients, and just plain laypeople, do not understand medical language. Medicine is a foreign language patients try to interpret. Unfortunately,  their interpretation is frequently wrong. One physician stated that there was a 50/50 chance the patient would do as instructed. Other physicians opined that 30 minutes after leaving an appointment, the patient could not explain or correctly restate the visit, diagnosis, and instructions. Although estimates vary, approximately $230 billion a year in healthcare costs are directly related to illiteracy and the social factors associated with illiteracy. Fully half of Americans do not read well enough to comprehend their health information. The results are preventable hospital admissions, emergency department visits, medication errors, and patients lost to follow-up and disease management.

We cannot fix this healthcare cost until we fix the illiteracy problem, and providers’ ability to correctly assess their patients’ levels of comprehension. At the very least, we need to convey and provide instructions at appropriate patient understanding levels. Just as we provide Spanish or Russian or Chinese interpretations, we need to provide information a third-grader or fifth-grader would be able to follow correctly, when necessary.  I do not think it is too hard to say, “take your green pill every day when you eat lunch.” We can even draw a picture.

P.S. This article was written at a 12th-grade reading level.

Programming Note:

Holly Louie co-hosts Talk Ten Tuesday today with Chuck Buck, 10-10:30 a.m. EST.


Holly Louie, RN, BSN, CHBME

Holly Louie, a member of the ICD10monitor editorial board, is a former compliance officer and past president of the Healthcare Business and Management Association. Louie has been a guest cohost on Talk Ten Tuesdays with Chuck Buck.

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